To be terrified DD might have ASD?

[Helfs]

DD is nearly one, and since DH was diagnosed as an adult a few months ago I’ve gone into a rabbit hole around early signs of autism.

When DH received his diagnosis our GP did say they’d let our HV know as there can be a genetic element and they would therefore send out some support and guidance on things to monitor in DD between her 1-2 year checks. As they’d not be able to diagnose or do anything until then.

I didn’t think much of it until she recently started moving her fingers strangely, googling it, it looks like stimming, then she started squinting a bit more than normal - so of course I did the stupid thing of googling that as well.

It has got to the point where it’s consuming me. Although DH scored pretty high in the testing, he is minimally impacted by his ASD, holds down a good job, and although you can tell there are ‘issues’ in terms of large social situations etc. is pretty ok in all other areas (if you didn’t know he had ASD you’d probably just assume anxiety)

My younger brother however is the opposite end of the spectrum, very severely impacted and still needs care at 27 years old.

Growing up seeing how my brother struggled it really is worrying me. And I don’t know whether it’s normal to worry about this or not as she is our first baby (and likely our last too - as if she does have ASD I could never bring another child into the mix based on how badly my brothers diagnosis impacted me growing up)

Oh hunny the reason they will absolutely NOT test for ASD before 2yrs 9mths is because a lot of early signs of ASD are also completely "normal" developmental behaviours. There's zero point in me saying don't worry because of course you're going to it's your baby! But what I will say is don't hyperfocus on it, if you notice something then pop a note in your diary with a couple of brief bullet points and then forget it and crack on enjoying watching your wee one grow and discover the world around them. At 2yrs 9mths which is the earliest you can get a referral then you can refer back to your notes and see if the behaviour is still happening and if you need to look into a possible diagnosis. From your personal experience you know ASD is a spectrum and there is no point wondering where your child may be on it IF they even are on it. You can also look into early intervention stuff as these are great for ALL children not just ASD kids just make sure it's accredited as there's a LOT of crap out there 🙄 none of its a cure so steer well clear of any claiming that but I did a lot of early intervention with my youngest after learning in general with my eldest and knowing what to watch for (both kids ASD) and he has progressed more quickly and easier than his sister did (although both are great kids with a few 'quirks' rather than severely affected and needing the level of care as your brother) Finally as you know you are born either with ASD or without it so you can't do anything to change the outcome, your child either is or isn't so hyper vilgilance is only going to harm you and steal your joy of these early years when they are like sponges and change hourly never mind daily!

No, it isn't "grotesque" at all. I bet your 'autism' is very different from the autism experienced by the OPs brother and in fact my own brother, who, at the age of 36, is in full time residential care, exhibits behaviours such as head banging and smearing his own shit on his surroundings.

Only idiot on this thread is you by the sounds of it.

Please google infant reflexes not going dormant.

There's no need for this. OP hasn't set out to offend anyone. Wind your neck in.

Both of mine have ASD - one HF and one with severe learning difficulties. It's hard work, yes but terrified? Either your DC has Asd or she hasn't and if she does, you deal with it. I don't understand what you hope to get from this thread. Fwiw, I love my DC dearly, we have our challenges and life isn't always easy but we do have a good life. It's Asd and not a bloody death sentence. I find your post quite offensive tbh.

As a parent of an autistic child myself, I was quite offended when I read the title… until I read the actual post and about your DH and brother. I noticed there was something going on with DD at about 12-18 months old - she wasn’t meeting any of her milestones (like a good 6-12 months behind on questionnaires), wasn’t attempting to walk or talk or anything. She got diagnosed at 4-5 years old which is quite young but she was under the paediatrician from 18 months old and went to an SEN nursery setting which I think accelerated the diagnosing process.

She’s now 8 years old and a lot more independent obviously but still needs quite a great deal of help and support, and my guessing is that she probably will for the rest of her life. I understand your worries completely - it’s HARD being an SEN parent, significantly harder than other parenting and brings it’s own set of challenges. HOWEVER, it’s not a death sentence being diagnosed - DD has her struggles which sadden me sometimes but she’s an amazing and very happy little girl and I wouldn’t change her for the world.

Ah I really feel for you. My eldest is severely autistic and needs 1:1 support 24/7. He started assessments at 18 months but I took him to the HV at 14 months. He was diagnosed just before he was 3. He’s 25 now. It has had a huge impact on his siblings growing up and they’ve all decided not to have children.

I was the same with my younger two. Only a year between them and I didn’t enjoy their younger years because I was obsessed with watching them and analysing everything they did.

I’ve no real advice except to say try not to worry but I know you will. X

OP I understand your worry. What’s she like at the moment? Does she babble, clap/wave/point, bring you things to show you?

Also - just to add - I think that you’re getting quite a hard time on this post. I knew DD has autism before she was diagnosed but hearing those actual words felt like a bus had just hit me and knocked the breath out of me. As a parent you know roughly that your child will turn 18, maybe go to university, get married and have children, move out and be independent. When you’re raising a child with a disability there is so much unknown on what their future will look like - will they be able to live independently? Will they be able to access work? Will they be able to build friendships and relationships? What will happen when I die? Even years down the line this keeps me up at night worrying about.

YABVU to be terrified; what is autism going to do, jump up and eat you?!? You are being extremely melodramatic, and it's not normal to worry like this.

And yes, I have a DC whose life is severely impacted by their diagnosis of autism.

If she is autistic, then she's autistic. Even if she is diagnosed tomorrow, it will tell you nothing because every individual is different. How her father is, and how her uncle is, gives zero indication of how she will be affected throughout her life. So while it's normal to worry about your child, there is no point in letting it consume you like this because there is nothing you can do to change it and nothing you can do to predict the future.

You can worry, but the worry doesn’t change anything.

As you know, it’s a spectrum but you’re child is your child and you will help them to achieve their best life.

Surely Autism is a Spectrum and each and everyone of us probably has at least a gilnt of a symptom.

Stop looking for it. Love your child however they are, you can't change who they are.

My little girl flaps her hands like mad when she’s excited, always has done since she was under 1 and is now 3.5. Once a random person told me that was stimming and she was probably autistic!

She’s not. It’s just a little quirk. All kids have them. It’s understandable that you are worried given the context but also know that worrying won’t change anything. I hope you can relax and enjoy your beautiful child.

Yes just to add my 4 year old DD is completely and utterly NT but made odd hand movements as a baby and small toddler. One of them was like a beckoning movement, hard to describe but she did it randomly and repeatedly.

I did have the same worry with my DS. Not because he shows any signs (he doesn't yet, at 2) but because my DH was diagnosed at 4. So it's always something we suspected we might have to deal with, when we had children. My worry has lessened as he's grown, as unlike his dad (who had delayed speech), he's very confident, talkative and sociable so far. No idea where he gets it from as it's also the opposite of me!😄 mind you, as an adult my DH is those things, he definitely struggled more with his ASD as a child than now.

What is grotesque is you not being compassionate enough to understand that autism is a spectrum and for some kids like my son life is a fucking huge struggle! Honestly he’s had the most horrific week with anxiety and SIB out of control , had to phone 999 on Monday after a huge meltdown which resulted in a head injury. I cannot imagine what it’s like for him to feel so out of control . People like you that minimise autism really piss me off 😡

@Diamondcurtains I think someone whose autistic knows it's a spectrum ffs.

As someone whose autistic and has a autistic child, it is what it is.

No amount of worrying will change anything, you just got to run with it I'm afraid.

Early diagnosis can only be a positive thing but she is only one so you have plenty of time.

She needs lots of love and support and see how it goes.

If it helps my dd was showing signs as a toddler but doctors dismissed my concerns.

She masked expertly until age 16/17 though anxious and had phobias that did impact her. This lead to a huge burnout

She has recovered now and is doing well but I wish I'd known sooner. I may have been able to prevent the burnout by advocating for her better younger.

Try to see the positive side of early diagnosis.

I understand it's hard but your husband is doing great there is no reason why your daughter can't as well.

Why is everyone on here talking like OP’s daughter has autism when OP hasn’t even said if she’s showing signs or not beyond ‘stimming’ which is really very normal for such a young baby?

My son has ASD. I wouldn’t change it, it’s part of who he is. When he was a toddler he could speak but he wouldn’t use words to communicate. He didn’t wave or point as a baby. By the time he was about three, I knew something was different and he was eventually diagnosed at 5. He would then just echolalia. I was so worried about what would happen to him.

DS is 20 now. He stayed in mainstream school with an EHCP. He excelled through school, went to college and is now at university. He works part time, is learning to drive and has a black belt in karate. If only I’d had a crystal ball when he was little, I wouldn’t have worried at all, he’s fine 🙂.

Please don’t worry about your daughter, what will be, will be.

No one is minimising it, spending hours on Tick tok isn't healthy. The op herself has experience of high needs autism as well as low to no needs in her husband. So maybe dial back the projection of your own situation when talking to other people who have told you they have autism as it could read as you 'minimising' their experience...